In the mid 1980’s, I began having symptoms that are common to most of us with WM. I saw doctors for seven years before a diagnosis of WM finally was confirmed. But a study of prior blood tests showed high protein levels as early as 1986, and an SED rate that had grown to 100 by the time of diagnosis in 1993. My hematologist advised me that life expectancy was two-to-five years, and having had it already for a number of years, I figured my time was running out. I asked what I could do to help myself. For example, would a better diet help? My physician at the time was adamant that nothing would make a difference. All hope was taken away. I walked in a daze for about two weeks. Then, one day I let out a primal scream and told myself I would not waste one more day in fear and sadness. I started reading about the disease, and about health. And I read an inspiring book about the power of a macrobiotic diet, Recalled By Life, written by Dr. Anthony J. Sattilaro, a physician with a terminal illness. I knew that if he could live, I could live. I would find a way.
My best friend had a computer and found that there were twenty known cases of WM at the CDC, and that a “chat line” had been started by IWMF’s founder, Arnold Smokler. I got a computer and became an active participant. I learned from my research that there were some medical treatments that could lead to partial recovery. But I also knew from my background in sociology that disease can impact the body on many levels, and to rely exclusively on the medical channel would run the risk of depriving myself of other avenues of help. We began having chats several times a day with the then-known world of WM patients, and often Arnie would call me directly. He always represented the medical approach, but I relied on complementary methods of healing. My preference was to keep in reserve the few medical silver bullets as long as possible.
Thus began my journey of taking my life back. I read everything I could get my hands on. I was reading a book about the antioxidant coenzyme Q10, and took it to my next primary physician visit. Although the product was not yet available in the U.S., I asked her if she believed it could help. I will never forget her response. It re-set the course of my life. She said she would not oppose its use, and that I did not have to choose to die of my disease. SHE GAVE ME HOPE! I jumped off her table and hugged her. Now nothing could hold me back. I changed my diet, began practicing t’ai chi, got a dog, quit a high stress job, and started seeing a nutritionist/chiropractor who prescribed supplements consistent with how my body reacted in muscle testing (kinesiology). I took a macrobiotic cooking class, and bought organic food. The change in my symptoms was dramatic and immediate. I had been very fatigued, having constant sinus infections, bronchitis, headaches, and severe bloody noses. Fortunately, I had very dear friends who rallied around me. We went on trips together. On most trips, before my body responded to the lifestyle changes I had implemented, I would often sit in the car while the others hiked around. But afterward, they could not keep up with me. I had regained great energy.
I started sharing my findings on the Waldenstrom’s chat line, which was growing daily. Our shared information became so important to us all! Since no research was being performed to help us, we knew we would have to raise funds and direct the course of action. We incorporated as the IWMF, formed a board of directors, and each of us focused on our respective specialty areas. I became Secretary, organizing the first few Educational Forums and writing newsletters, minutes, and advocated complementary therapy methods and approaches. We were very successful, writing brochures and pamphlets, each of us evaluating research proposals and then funding research. And here we are today, with our wonderful Foundation that others have carried forward to its current amazing state.
Eventually I came to the point where I could delay treatment no longer. It was 1999, and my IgM was about 8000 with a viscosity a very dangerous 7. But my mother was dying of cancer at the time, and I did not want her to witness what I would have to go through, as I was her caregiver. So I delayed treatment for a year by undergoing monthly plasmapheresis. I had discussed stem cell transplants with the doctors making presentations at one Ed Forum who sat at my table (see, it is good to organize events!), and was convinced this was the way to go. I felt that current treatments just led to a downhill spiral. However, my insurance provider would not approve the procedure because there was no evidence yet that it could help. My doctor knew I had little time left. He said he would perform a tandem stem cell transplant free of charge, paid for from his research funds. Well, I was in! There were complications from the procedure – I nearly died from a collapsed lung and severe septicemia, and of course there was nausea, hair loss, fried brain syndrome and depression. But in the end it turned out to be a wonderful success. It gave me 15 years of symptom-free health. That was fortuitous, as for 17 years I was able to take care of my husband before he died of early onset dementia.
Two years ago I was treated with dexamethasone, rituxan and velcade combined therapy, which gave me a less than two-year reprieve. Now I am on ibrutinib, which appears to be very successful. My IgM is about 2500 after two months of treatment, and all my blood counts are normal. Through all these years I have been fortunate to nearly always feel fabulous. After my husband passed away inn 2009, my son, daughter-in-law and I started a green winery. It’s a fun, rewarding lifestyle – I kayak, go to the gym, line dance, garden, travel, harvest our grapes, and drive a trike I call “Wally” (named after our disease).
Regarding all the treatment choices I made, I first studied them thoroughly, evaluated results often, and made adjustments along the way. One key lesson I learned is that when one is heavily involved in one’s own survival, it gives a tremendous sense of purpose, and certainly a feeling of power and direction. My physicians have treated me as a partner in my care. They’ve provided the pros and cons of treatments, but I made the final selection. I am woman, hear me roar (or maybe giggle a little)!
Chateau Davell Winery
*As the reader will note from the text, Davell Hays was one of the very early members of IWMF. She was involved in writing articles of incorporation and mission statements, served as Foundation Secretary, and was an organizer of the annual Ed Forums that have become one of the most important venues for information exchanges among the Waldenstrom’s physician, researcher and patient communities, under the continuing sponsorship of the IWMF.